No sugar coating …

Ava Appleby

She has such a movie star name doesn’t she? She’s worthy of that and SO much more.

It’s been such a long time since I blogged about this princess. Truth is; I just haven’t had the strength to blog about her because to be honest, it’s mentally draining. She has, and is going through so much that I don’t think in the four years of her life I have stopped and taken a breath, none of us have.

She has recently undergone surgery to effectively give her a gastric bypass, she won’t ever be fed orally, and that’s okay, I accepted that a long time ago – and let me tell you, after having had my other three needing Calpol etc, that feeding tube she has is a LIFESAVER. No moaning that the medication doesn’t taste nice, ha!

We are still on a decline with her kidneys and the battle with her urologist and her renal team is relentless. She hasn’t been well for certain operations and she is literally getting infection after infection, as it stands now she is going into hospital tomorrow for a course of IV antibiotics to combat get another infection that is resistant to the standard antibiotics. This is, in the hope that she can be infection free for the 1st November when her next surgery is due; her 31st one to be precise.

This is to try and elevate the infections she gets before we explore the final avenue that I don’t even want to think about right now.

Developmentally, she does what she wants in her own time; Ava time. Walking is still a myth in Ava’s world. But that’s fine, she sure can crawl around and get to places she wants to when she wants, so at least she is getting around some way.

I guess the most exciting news of all for Ava is that she is now officially school age and in school for three full days a week. She loves it and I love to send here, her team that look after her are fantastic and I trait them whole heartedly with her, they call with any concerns straight away and I’ll either reassure them, or go and get her if I think she isn’t right. It’s a huge step that I’ve finally let her go, let her go to start her life as a little girl.

The journey I never thought we would be talking.

There’s still a heck of a road to travel; with lots of bumps, detours and problems. But we will get there, I’m sure of it.